Pew urges ONC to offer regs that aid more expansive data sharing

The Pew Charitable Trusts is urging federal officials to adopt policies that would enable patients to access more of their own health records, as required under the 21st Century Cures Act.

A letter from the organization to Don Rucker, MD, national coordinator for health information technology, calls for the Office of the National Coordinator for Health Information Technology to support expansion of data available for clinicians and patients to access beyond what is available in the Common Clinical Data Set, which Pew contends omits essential data relevant to individuals’ personal care.

“Challenges with interoperability—the ability to exchange information electronically—hinders clinicians and patients from obtaining medically relevant, actionable and usable data to inform treatment decisions,” according to the foundation, which conducts research to inform and engage citizens to pursue common causes and obtain tangible results.

While ONC requires electronic health record developers to give patients access to data through an application programming interfaces (APIs), current regulations only require that the API access continuity of care documents, which often lack key data necessary for patient care decisions, including family health history and diagnostic imaging reports.

Pew notes that the Cures Act requires vendors to provide APIs that permit access, exchange and use of “all data elements in a patient’s electronic health record to the extent permissible under applicable privacy laws without special effort,” the organization tells Rucker. This would enable easier patient access to more of their information, foster interoperability and facilitate development of new clinical decision support tools.

In requiring data elements in EHRs to be made more available, ONC should not limit access to information because of a lack of standardization, Pew urges.

“For example, some free text notes may be essential to transmit, or some critical data elements may be coded in standards that are not widely adopted. Non-standardized data are useful for clinicians and patients even when displayed as text or in a PDF and should be accessible through APIs.”

The Pew letter includes a list of standards widely available that would support giving a more expansive level of data to patients and clinicians in such areas as radiology, allergies and family health history. Other standards, such as social determinants of health, have not yet been widely adopted.

And still, there are additional standards that are not yet fully developed to support such as information on medical device data, patient generated data and genomic data, according to Pew. The complete letter to Rucker is available here.